A bit of encouragement.

Today’s post will actually be a comment received  yesterday in reply to my post  No Winners.

Hi Allison,

I’m so sorry you’re so discouraged of late, but I certainly understand why…it is soul draining to battle corporations, and there are also some aspects of soul drain in raising a child on the spectrum…

I’d like to offer you the thought that when I look back on the experience of raising my own son on the spectrum, Danny, which I’ve been doing now for 25 years (Time sure flies when you’re early intervening!), it seems clear to me that the most difficult aspects of raising Danny were reacting to society’s take on my child and the roadblocks thrown up by others that had to be removed before we could move forward with our lives together.

It sounds so easy, “removing roadblocks,” but it is so hard breaking down barriers to places that wouldn’t welcome him (from mainstream kindergarten to birthday parties); it was actually like sculpting rock with fingernail, and I do remember those days well because your words bring me back…

When you grow old life steals things from you: your eyesight, hearing and waistline to name just a precious few, but one thing growing older offers is the opportunity for wisdom from experience, if you choose to take it…I have chosen to lead a spare life where my wisdom and love are about all I pack away in my little carry on bags when I travel, tucked right next to my packages of gum and paperback novels, and what I know about raising Danny is that the pain of this experience came mostly from blasting my own paradigms into smithereens and then fashioning news ones capable of fitting in all that life raising a child on the autism spectrum can offer…

How much can that be, you may wonder? For it is deceiving; the work done to raise a child with autism, especially when they are young; is sometimes backbreaking, but more often simply patience trying…for one year of his life Danny would enter any room he saw and sweep everything on any level surface right to the floor: like my husband, he hates clutter! If I had turned this into a power struggle we may never have recovered, for in these small battles with our children no one really wins or loses; it was me who had to “offer it up” as my mom would say (or “suck it up” as my husband would mutter), but the point is that on the way to convincing Danny that to live comfortably together he had to tolerate a bit of clutter I first had to convince myself that I needed to let go of the notion that children should obey, or even listen, to my own rules on what to do with cluttered tables or supposedly misbehaving children.

Children with autism force you to reevaluate all your priorities…to prune when you’d rather flourish, sit quietly when you want to explode, take pride in what others assume your ashamed of; it’s a very confusing experience, emotionally and socially speaking, to raise a child on the spectrum…

Society should help, and I do believe we are getting there; babies with autism that shared the nursery with me were routinely institutionalized, when my own son was diagnosed nearly a quarter century ago many still bought into the theory of “refrigerator mother” as the cause of my son’s poor eye contact and difficulty relating to others…we now know autism is biologically driven, but we still don’t understand how much society enters into any child with autism’s chances for happiness (or their families’).

Children with autism are the tiniest and most honest non conformers, and this truth can be what sets you free…to understand the value of not conforming mindlessly in our culture, to fight for our children’s rights in a society still so steeped in prejudice against people with autism that few understand they are saturated with it, to wake up renewed and ready to enter the brave new world of autism when you never asked to be there in the first place…

Did Danny really lose when dealt the hand of autism? I don’t think so. I believe that he is every bit as accomplished as any 25 year old in his graduate program at USC, with his close circle of friends and cozy place in my own heart, but this was just Danny’s particular path and I personally hold no special pride simply because he got into a good school: he is happy and fulfilled, and this was always the main goal, in an important way, the only one…once I gave up wanting my coffee table clutter to remain undisturbed, once I gave up caring what my neighbor thought (the same day, coincidentally, I gave up hating my neighbor), and once I focused on the child before me rather than the child I was wishing I had, I was then not only on the best path for Danny to take to a happy and healthy adulthood, but on the best path for me to be happy once again as well…

This time, as opposed to the rather tense happiness of living up to other’s expectations I dimly recall from my youth, I am happy for what is good and true about myself and my son. Some days this happiness, this tolerance and acceptance of life in it’s raw form, breaks loose and I love everyone I see; other days I stumble upon an event or experience that throws me back to my younger self, gets my Irish up, and forces me to lace up my boxing gloves for yet another round with society, perhaps to spend more time shadow boxing with my own preconceived notions…

Pepsi and Global Giving, are you listening? It’s you and I in the ring this morning and I have decided I won’t stop fighting until you make it right for “the Pepsi Ten.” What makes me most angry this morning is the fact that rather than supporting these families in their quest to swim upstream, socially speaking, and raise their children with differences to a happy and healthy adulthood, they’ve been scammed via their efforts to do so…scammed by an individual, perhaps, but also in the process of being scammed by the greed and anonymity of corporations…

Allison, they are not as powerful as you think. And what’s in your heart for your child? Way stronger than you know…

Keep the faith!

Warmest regards,
Patty

Patty Dobbs Gross
Executive Director
North Star Foundation
http://www.NorthStarDogs.com

 

 

3 thoughts on “A bit of encouragement.”

  1. It’s a great post, I read it when she made the original comment and am glad you are bringing it even more into the light.

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